Relief, Guilt, and Grief After a Long Dementia Illness

When someone you’ve cared for through years of dementia dies, you may be surprised by what you feel. Sadness, certainly. But also, perhaps, a quiet sense of relief that it’s over, and right behind it, guilt for feeling that way. If that’s you, you are far from alone, and nothing is wrong with you.

Is it normal to feel relieved when someone with dementia dies?

Yes. A study of Alzheimer’s caregivers led by researchers at the University of Pittsburgh, reported by NBC News, found that 72 percent of caregivers said it was “somewhat” or “very much” a relief when their loved one died, and more than 90 percent believed it was a relief for the person who died. One of the researchers, Richard Schulz, said it’s important for people to know that feelings of relief after a loved one’s death are normal and no reason to feel guilty, and he noted that caregivers may grieve before the death. Among the 53 caregivers who could be reached a year later, average depression scores were lower than in the months before the death. (This is a news report of an earlier study with a small follow-up group, so treat the numbers as a general guide, not a prediction for any one person.)

Why do relief and guilt arrive together?

Because both can be true. In his writing on grief and dementia, bereavement expert Kenneth Doka writes that grief continues after the death and can be complicated by guilt about decisions such as moving a loved one to a care facility, and by troubling feelings of relief. For some people, he writes, the death brings relief and a sense of freedom that caregiving has ended; for others, those feelings are mixed with guilt and sadness.

The Alzheimer’s Association says it’s normal to feel guilt and to regret things about your relationship, and that it’s common to feel conflicting emotions, such as love and anger at the same time. Pauline Boss, the psychologist who developed the idea of ambiguous loss, likewise says that anger and guilt are normal. See our guide on ambiguous loss.

What if I already grieved for years?

You may have, and it’s still common to grieve again. The Alzheimer’s Association notes that as dementia progresses it’s common to go through feelings of grief and loss more than once. Doka describes grief as a constant companion of dementia that continues after the death. Early grieving doesn’t always make the death hurt less, and it doesn’t mean you won’t be hit by it later; see our guide on why grief can hit months later.

Why do I feel lost now that caregiving has ended?

Caregiving can fill every hour for years. Doka notes that after the death, caregivers may feel a lack of focus and a sense that their present activities are meaningless. If your days were organized around someone else’s needs, an empty calendar can feel like another loss. That’s a normal reaction to a major change in your daily life and identity, not a sign you did something wrong. Many people find it helps to rebuild small routines gradually and to reconnect with friends and activities they set aside.

What about guilt over decisions I made?

Many caregivers replay decisions: a move to memory care, stopping a treatment, a moment when patience ran out. The Alzheimer’s Association says families who have been through late-stage decisions tell them it’s best to gather information and move forward rather than second-guessing afterward, and that there are many good ways to provide quality care. It also advises that end-of-life decisions should be guided by the person’s own values and wishes and by their comfort and dignity. If you made choices that way, you did what you could with what you knew. See our guide on what families face in the final stages of dementia.

Will other people understand?

Not always. The Alzheimer’s Association points out that some people may not understand your grief because most people think grief happens when someone dies. After the death, people may call it “a blessing,” which can feel dismissive, or assume you’ve already finished grieving. It can help to find people who’ve been there: the Association runs support groups across the country. See our guide on finding grief support.

What can help?

• Let yourself feel all of it. The Alzheimer’s Association advises letting yourself be as sad as you want and accepting guilt as normal
• Talk to someone you trust about your sadness, guilt, and anger, whether that’s a friend, a counselor, a faith leader, or other caregivers
• Use support that already exists. The Alzheimer’s Association has a free 24/7 Helpline at 800.272.3900. If your loved one had hospice, ask whether the program offers bereavement support for family members, since many hospice teams do
• Take care of your body. Caregiving often wears down your own health, so rest, eat, and see your doctor for anything you’ve put off
• Mark the loss. A memorial, a ritual, or writing a letter can help acknowledge a person you may have been losing for years

When should I get professional help?

Boss’s guidance for caregivers is to seek professional help if you feel depressed, physically sick, or hopeless; if you’re relying heavily on alcohol or drugs; if you’ve stopped taking care of yourself; or if you feel like hurting yourself. If you ever think about harming yourself, call or text 988 (the Suicide & Crisis Lifeline in the United States) at any time. If your grief feels stuck or is getting worse months later, see our guide on complicated grief.

What about all the practical tasks?

They can wait for a little while, and you don’t have to do them alone. If you’re the executor, see our guides on the first 30 days after the funeral and an executor’s realistic timeline, and the first year after a death.

For saying goodbye before the end, see How to say goodbye to someone with dementia.

This is general educational information, not medical or mental health advice. If you’re struggling, a doctor, a grief counselor, or the Alzheimer’s Association Helpline (800.272.3900) can help with your specific situation.